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Monday, October 3, 2016

The “Out-of-Sync” Child Grows Up: An Autistic Perspective

Sara M. Acevedo

[image: Book cover of The Out-of-Sync
Child Grows Up: Title in teal text, on
background photo of five older kids
running across a field, from behind.]

The Out-of-Sync Child Grows Up is the newest book from Carol Stock Kranowitz in her "Out-of-Sync" Child series. Subtitled "Coping With Sensory Processing Disorder in the Adolescent and Young Adult Years," the book focuses on the everyday experiences of parents, caregivers, and medical professionals who support adolescents and young adults marked oppressively by diagnoses like Sensory Processing Disorder (SPD). Although a significant number of the concepts and practices included in this book are discredited and marked as abusive by autistic and other neurodivergent people ourselves, the book has received substantial praise from non-neurodivergent authorities in the therapeutic professions, as well as from clinicians, parents, and educators. The book has also been praised by The Children’s Hospital in Boston, and contributors of magazines such as Brain, Child and Exceptional Parent.

The literary panorama in this field has changed dramatically, compared to the late 1990s when the first Out-of-Sync Child book was published. Neurodivergent authors, and our political companions, have taken a firm stance against such single-handed approaches. Under the umbrella of the Neurodiversity Movement, an increasing amount of important literature from autistics and otherwise neurodivergent authors has been published in the past few years, including Maxfield Sparrow, Michelle Sutton, and Amy Sequenzia and Elizabeth J Grace. In like manner, social justice-oriented blogs written by autistics and otherwise neurodivergent people -- especially authors focusing on the intersections of race, class, gender expression, sexual orientation, disability, and ethnicity -- have received widespread acclaim in the various disability communities, both in the United States and abroad. Autistic Hoya, Sonia Boué, ACAT: Ala Costa Adult Transition Program, and Neurocosmopolitanism are among some of the leading contributors in the blogosphere today. Both the books and the blogs amplify and prioritize the first-hand lived experiences of historically misrepresented neurodivergent communities, while disproving medical narratives and misconceptions around Neurodiversity. They do so by providing well-informed, well-researched, and politicized literature centering personal narratives -- starting with our own stories.

Given the number of autistic and neurodivergent resources and experts available, it is distressing and problematic when books like The Out-of-Sync Child Grows Up continue to be written, published, and acclaimed by neurotypical professionals, without the input of neurodivergent people. Some would argue that these are inaccurate conjectures and that the stories of neurodivergent adults are indeed included in this volume. Although many such stories are included in the form of vignettes, the thematic structure and the content are exclusively geared toward parents, educators, therapists, and caregivers.

On several occasions, the author addresses a selected audience by insisting on the necessity of providing them (the family, the teachers, the therapists) with strategies "to cope" and "to survive" their sibling/student/patient’s "out-of-sync" behavior. One of the primary ethical concerns when neurodivergent people are not seen as the primary audience for books written about us (without us) is that the "noble" task of "bringing in" our voices becomes lost in the pages that erase us. Used this way, our stories become the crux of an un-narrative of sorts -- a narrative that uses our voices to further the well being of those around us, but not necessarily our own well-being.

The language used in this book is also problematic. As noted above, the thematic structure and content of The Out-of-Sync Child Grows Up are geared toward a specific audience: parents, teachers, therapists, clinicians, and caregivers. And as the title indicates, the motivation for engaging with these groups pivots on the belief that neurodivergent children, youth, and adults are inherently ‘out-of-sync’ with the world around us -- and that it is us who must adapt to “typical” inhospitable environments and conform to “normal” behaviors.

This belief system, which is based in pathological ideas of cognitive and bodily difference, reinforces negative stereotypes and attitudes toward those of us who are targeted by it in the everyday. More worrisome is the fact that these attitudes are inevitably connected to people’s violent responses to us in shared spaces (at school, our work place, public transportation, health care facilities, grocery stores, and other arenas). Words such as “epidemic,” used casually in this book to refer to the “proliferation” of people diagnosed with some form of sensory “disorder,” have proven to interfere with and taint our interactions in the social world. The very term “disorder,” which is a staple of the book, champions a false idea that the world today is perfectly harmonious, and that neurodivergent embodiment alters the "peace" of socially unjust environments. Overall, the language employed in this book demonstrates substantial disconnection between the work of neurotypical “professionals,” and that of actual neurodivergent people. An important oversight is that many neurodivergent authors are both personally and professionally proficient in all areas in which this book claims to be relevant.

In closing I offer three questions that remain unanswered in this book: Why is there no mention to the barriers and attitudes that seek to assimilate us according to typical ways of behaving? Why does this book erase critical approaches developed by professionals in the neurodivergent community? And finally, why does this book fail to challenge the many ways in which the world refuses to adapt to us?